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Facing Dementia Survey
Identifying Critical Barriers to Optimal Care
The Facing Dementia Survey, a first-of-its-kind pan-European survey commissioned by Eisai, Inc. and Pfizer Inc, was conducted among more than 2,500 people including those with Alzheimer's disease, caregivers, physicians, policy makers, and the general population in France, Germany, Italy, Poland, Spain and the U.K.
According to the survey, although the majority of physicians surveyed believe that a critical treatment window exists (81 percent) - of these, 74 percent believe treatment should be initiated within one month - a delay exists between the time people first notice disease symptoms and receive a diagnosis. Difficulties in distinguishing when the normal signs of aging are, in fact, early Alzheimer's symptoms, coupled with fear of the condition itself, may contribute to this delay, the survey shows. In addition, 73 percent of physicians feel that Alzheimer's disease is under-diagnosed in their respective countries, and all groups surveyed agree that government does not invest enough in research, treatment, or support, and does not provide adequate resources for those with Alzheimer's disease. These alarming results point to the need for earlier diagnosis and treatment, more equitable allocation of resources, and more widespread acknowledgement of the impact of Alzheimer's disease and other dementias, according to a group of experts who have reviewed the results and their implications.
Normal Aging - or Alzheimer's disease?
More than three-quarters of physicians surveyed, except for those in the U.K., believe there is a critical window during which treatment should be initiated, and nearly three-quarters of these (74 percent) believe intervention should begin immediately or within one month of diagnosis, 87 percent agree that early treatment can delay disease progression, and 85 percent agree that delaying treatment can have negative effects on the patient. Despite this belief, caregivers, for example, claim that nearly two years (1.7) elapses between the time symptoms are noticed and a diagnosis of Alzheimer's disease is determined - almost a year longer (2.7) in the U.K. Caregivers also report that almost a year (0.9) passes between symptom recognition and consultation with a physician. Despite the significant amount of time cited, the majority (59 percent) are satisfied with the time it took to get a diagnosis.
Inability to recognize the illness in its early stage, combined with denial and fear of the disease, might cause delays in seeing a doctor and ultimately getting a diagnosis and initiating treatment, according to the survey. When asked why they waited to see a doctor, 70 percent of caregivers said that they were not aware that the symptoms were signs of Alzheimer's disease, 64 percent claimed that they were in denial about a loved one having Alzheimer's disease, 61 percent did not realize how serious the symptoms were, and 58 percent believed the symptoms were a part of normal aging. Nearly one-half (48 percent) of caregivers believe that fears about Alzheimer's disease keep people from speaking with their physicians about the condition, and nearly one-third (31 percent) of physicians agree that under-diagnosis of Alzheimer's disease may be a result of patients or families choosing to avoid unpleasant issues.
The vast majority, physicians included, believe that most people would have difficulty differentiating between early signs of disease and normal aging. The survey shows that 86 percent of caregivers believe that most people would not recognize these differences, and 65 percent feel that primary-care physicians also have difficulty detecting Alzheimer's in its early stages. While 67 percent of caregivers first consulted a general practitioner (GP) or primary care physician (PCP) regarding their loved one's symptoms, 70 percent of physicians agree that GPs and PCPs would also have trouble detecting Alzheimer's in its early stages, and 35 percent say that even specialists - neurologists and geriatricians - may have the same difficulty.
Alzheimer's Disease Is Not a Healthcare Priority
While policy makers surveyed recognize that Alzheimer's disease is a serious condition, these respondents identified a perception among governments that Alzheimer's disease does not affect the most productive members of society. Consequently, policy makers might direct less attention - and less funding - to research and resources for Alzheimer's disease. Eighty percent of caregivers and 71 percent of physicians feel that their governments do not invest nearly enough in treating Alzheimer's disease. Furthermore, 62 percent of caregivers and 65 percent of physicians feel that the government does not provide adequate resources to help patients, and nearly one-half (45 percent) of caregivers believe the government is a barrier to seeking medications for the disease.
Understanding the Full Impact of Alzheimer's Disease
Influencers suggest that they are beginning to recognize that the burden of care is on the patient's family and society, and its impact cannot be measured by epidemiological data alone. Similarly, 93 percent of the general population that responded to the survey believes Alzheimer's disease can have devastating effects on the patient's family. Ninety-four percent of caregivers surveyed state that caring for a person with Alzheimer's disease is life-changing, 89 percent say it is exhausting, and 66 percent say it is soul-destroying. One French caregiver reported, "It ruined my life." The majority of caregivers also cite modifying their living arrangements, curtailing their social life, and inability to take or enjoy holidays or time off as major consequences of caring for a person with Alzheimer's disease.
Lack of Understanding and Consensus That Something Can Be Done
The survey indicates a lack of understanding and consensus among respondents that something can be done to manage Alzheimer's disease. Caregivers acknowledge that delaying treatment can have negative effects (79 percent), early treatment can delay disease progression (77 percent), and available medication can slow its progress (73 percent). Although some caregivers (46 percent) know that a variety of treatments is available, only 30 percent feel that effective treatments are available.
Physicians responded similarly to the same series of survey questions about treatment: 85 percent claim that delaying treatment can have negative effects, 87 percent agree that early treatment can delay disease progression, 87 percent acknowledge that available medication can slow its progress, and 70 percent are aware of a variety of available treatments. However, only 41 percent say that effective treatments are available.
The general population reflects similar sentiment regarding treatment: While 62 percent believe that medication exists to slow disease progression, only 36 percent acknowledge that a variety of treatment options are available, and only 24 percent believe that effective treatments are available.
Furthermore, the survey indicates that most people with Alzheimer's disease are unaware of local Alzheimer's disease associations, such as the Alzheimer's association international chapters throughout Europe. Those who know about them feel they are a valuable resource that provides practical help and emotional and psychological support.
About the survey
Interviews were conducted face-to-face or via telephone by Millward Brown, a global market research agency, with 618 caregivers - spouses, children, and others in the six countries - who are unpaid primary caregivers of a diagnosed Alzheimer's disease sufferer, and with 605 primary-care physicians and specialists under age 70 who have been in practice for more than five years and spend more than 50 percent of their time on direct patient care. Ninety-six qualitative interviews were conducted with people with mild-to-moderate Alzheimer's disease and 60 key health-policy managers and decision makers across the six countries during February and March 2004. In the general population, interviews were conducted with 1200 people age 18 or older who are neither Alzheimer's patients nor caregivers for someone suffering from the illness.
Bond, J., Stave, C., Sganga, A., Vincenzino, O., O'connell, B. and Stanley, R. L. (2005), Inequalities in dementia care across Europe: key findings of the Facing Dementia Survey. International Journal of Clinical Practice, 59: 8–14. doi: 10.1111/j.1368-504X.2005.00480.x